Saturday, December 6, 2014

My symptoms are always changing.

I am sick of pain and new pain and new symptoms and changing symptoms and blood tests and medical tests and not knowing if something new is brewing or just the same old myositis which always seems to be changing.
I have extra and extreme tingling in my toes and milder but similar tingling in my lower legs. My liver blood tests are raised and I have nausea and stomach pain and loss of appetite and loss of taste and cannot eat fried foods or alcohol. When you know you are susceptible to autoimmune disorders you do tend to think that what you are experiencing is probably related.

Only time will tell...
I am having a nuclear medicine test on Tuesday called a HIDA scan which is a procedure used to diagnose problems in the liver, gallbladder and bile ducts.
A radioactive chemical will be injected into a vein in my arm to see if I have Gallbladder inflammation, a bile duct obstruction or an abnormalities in the bile ducts.

GALLBLADDER: Gray's Anatomy 20th ed. A pear-shaped organ located under the liver that stores and concentrates bile secreted by the liver. From the gallbladder the bile is delivered through the bile ducts into the intestine thereby aiding the digestion of fat-containing foods.

Friday, February 28, 2014

Living with myositis: What you can do to help yourself Part 1

Living with chronic illness strategies

Living with myositis, or any chronic illness,  requires certain adjustments. It is important to make healthy choices for ourself - no one else will, no one else can. It is up to us to keep our symptoms under control and take control of our own health with the advice of professional health providers.
Managing myositis starts with proper treatment, including medication and therapy. But there is more we can do to help ourselves each day. These daily decisions may influence the course of our illness: whether our symptoms get worse; whether we stay on an even keel or experience a flare.

Things we need:

  • Education. Learning about our illness. This allows us to make informed decisions about all aspects of  our life and treatment.
  • Personal Responsibility. Taking action including the basics of taking medication as prescribed and keeping appointments with doctors and the sometimes more difficult tasks such as asking for help from others when we  need it.
  • Perspective. Having a wider perspective on the disease is important: painful times won't last forever and it may be difficult to believe things will get better again unless we have this wider perspective. Also realising there are people worse off than ourselves really puts our disease in perspective.
  • Self-Advocacy. This means being an effective advocate for yourself so you can get the services and treatment you need.
  • Support. Support from others is essential to feeling less lonely and enhancing the quality of your life. Having someone to talk to who understands is important and this could be through a forum such as Daily Strength.
  • Hope. Believing that you can cope is essential. With good symptom management, and pacing and understanding your limitations, it is possible to experience long periods of feeling okay, even good. 

Thursday, October 17, 2013

Stress an Illness

stress and illness presentation
Some important points I got from this presentation were that:
  • your body does not care if it is a big stress or a little stress
  • the adrenals and cortisol play a large part in stress
  • that we need to address the stress, even for a minute as it comes upon us
  • there are many ways we can help ourselves including humour, mindful breathing, music, exercise and meditation.

Stress, Immunity and Your Health

National Myositis Convention Orlando Florida
by Sheralee Beebe
Holistic Health Practitioner

Monday, August 12, 2013

Learning to express your needs when you have chronic illness

I am trying to learn to recognize my own needs and the benefits of voicing them to others. This is both with my family and in the wider community. Is there really anything wrong with asking for the shopping bags to be carried out to the car?
I am also trying to learn about the best ways to ask for help. The following talk is from people with Myositis and their challenges of expressing their needs as well as some helpful tips on self-advocacy.
Self-Advocacy When Coping with Myositis

Friday, July 26, 2013

About chronic disease: muscle weakness

Mother Combing Child's Hair painted 1879 by Mary Cassatt
 
I can longer brush my own hair with ease. It is a major effort which causes pain. I need someone to brush my knotted hair.

I can no longer cut the veges with ease. It is difficult and dangerous. I need someone to cut my health giving foods.

I can no longer hang the washing on the line with ease...

You get the idea? I could go on but I think you get the idea. I don't really want to whine on and complain. I know there are many people out there with worse problems than mine. It's just that I had a realization: How can I be a mother to my children if what I really need is a mother. How can I be a mother when I need a mother?

Friday, June 14, 2013

Myositis Outcomes from NINDS

The DM Disease Activity Collaborative Study Group, and later the International Myositis Outcome Assessment Collaborative Study Group recommended development of outcome measures in all forms of IIM  - Idiopathic Inflammatory Myopathies -  in adults and children, and coordination and facilitation of clinical trials in adult and juvenile myositis. 

The main reason stopping this group from undertaking large multi-center trials in myositis is the lack of validated disease activity and damage indices. 
 For this reason, the first in a series of two workshops were held to address the following: 
1. Use of the core set of outcome measures recently identified to develop a myositis disease activity index, a preliminary definition of improvement, and damage index, and 
2. to develop consensus on issues related to the general conduct of clinical trials, extend of improvement and damage, development of inclusion and exclusion criteria and appropriate therapy, and recommendations in regard to the trial duration, dropout criteria, safety assessment, and post-trial evaluations. NINDS 2001

Since this was written things have progressed more on this soon. (Sorry, my research is slow)



Saturday, June 8, 2013

What is myopathy

The Muscular Dystrophy Foundation has some good fact sheets about myopathy including information about the three main types of inflammatory myopathy - Polymyositis (PM), Dermatomyositis (DM)and Inclusion Body Myositis (IBM) in the one pictured here.
To find out

  • What are Inflammatory Myopathies
  • What causes Inflammatory Myopathies
  • What are the forms of Inflammatory Myopathies
  • Can Inflammatory Myopathies be cured
  • How are PM, DM and IBM diagnosed
  • What happens to someone with these diseases
  • Treatment
  • and more
please click on the link below.


 Facts about Inflammatory Myopathies - Muscular...
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Saturday, May 25, 2013

ACTIVITIES OF DAILY LIVING (ADL) CHECKLIST

The Checklist is provided to help you think of all the tasks you do and may need assistance with. This checklist is something you may find useful if you are starting to have difficulties with daily activities such as personal grooming like shaving or brushing your hair or preparing and cooking food.

I do have problems with these and like some of the suggestions:
Do you use or would you like to use adaptive devices to prepare meals?
For example:
• Rocker knife
• Mini-food processor/chopper
• Adapted spatula
• Color coded burners and knobs
• Digital timer
• Lightweight unbreakable bowls
• Lower work surfaces

This checklist is not only good to face facts and clarify these concerns for yourself but it may help your doctor, specialist or rehabilitation specialist of physiotherapist to understand where you are and how to offer help.
Keep in mind though it is not specific for Myositis.

http://www.oregon.gov/DHS/STEPS/docs/module1-handouts.pdf

If anyone does know of a checklist that is specific for muscle disease please let us know. Thanks.

Monday, April 29, 2013

Online current study into Myositis

If you have Dermatomyositis (DM) or Polymyositis (PM) and are in the USA, The Henne Group in San Francisco is doing an online study in May (dates to be determined) paying $100.
Contact Tom Mayer at (415) 348-2911 or email tmayer(at)thehennegroup.com

Thursday, April 4, 2013

Do you get good support from your GP?

I just found out today from a group of women at hydrotherapy that I may be eligible for the "Care Program". They said my GP should have told me about it especially as I am falling down a bit. I have never heard of it before. I think it is the MBS Primary Care Items Allied Health Services Under Medicare for People with chronic conditions and complex care needs! Catchy name! This scheme is in Australia. Next time I visit my GP for a prescription, and this is quite often, I will be asking about this program.

Do you have anything like this available to you? How did you find out about it?

Friday, March 8, 2013

Myositis Malaise


  • Malaise (/məˈleɪz/ mal-AZE) is a feeling of general discomfort or uneasiness, of being "out of sorts", often the first indication of an infection or other disease. 
  • Fatigue occurs with malaise in many common diseases. 
  • Malaise can be accompanied by a feeling of not having enough energy to accomplish usual activities. 
  • A vague feeling of bodily discomfort, as at the beginning of an illness.
So this is what it has come too. I wake up in the morning and head down stairs for my first cup of tea and can't even pick up the cup without pain. It's like lifting a 10 kg weight! (I use to lift weights for fun!)

Photo By: Cpl. Courtney C. White                                                                                                      

This simple act of waking and getting a cuppa has different conotations for people with chronic pain and muscle disease:
1. Waking
 - realizing your body is in pain
 - trying to get out of the bed (trying may be the operative word, especially when you find it difficult to roll over or sit up)
2. Walking
- stiffness but just try and get moving
- down the stairs is an extra challenge and extra pain (think yourself lucky you can still manage pain)
3. I could go on but typing is tiring my fingers, arms, shoulder and back...
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